My Handy Man

Trevor can fix practically anything. Sometimes it is amazing to watch him fix something that I thought "there is no way". Of course, when possible, he finds a way. Most of the time he does a better job than the professionals. This weekend he has fixed my phone, SIM card, replaced the garbage disposal, took the old one apart, figured out part of the navigation system and has said he would fix the blanket basket and blind wand. I'm sure there is even more that he has fixed because let's face it, we do have three boys. Also in his spare time he has attended a gardening class and visited the teachers garden (where the gigantic watermelon came from) and has several ideas on how to fix our currently producing garden as well. If it is something mechanical, electronic or anything with an engineering component- I have no fear! My handy man has a beautiful mind.

Davin's Testing

We recieved the results for Davin's genetic testing. He is positive for TRAPS as well. We were not very surprised since it explains his recent 104 degree temperature and symptoms. It also explains a number of his health issues over his lifetime. We are going to meet with some specialists and try to sort out his issues. Since this disease is in every cell of the body, some of his issues differ from Ryan's so we might have to see different specialists and convince them that TRAPS really does exist. Some MD's have been supportive and some think we are inventing this. If I could invent anything it would be a super vitamin that is a "cure all" and sell it for three easy payments of $39.95. OK just kidding. At any rate, we feel bad for Davin, but are happy to know what is wrong. Hopefully we can find effective ways to help him be happy & healthy.

Congratulations Terra & Josh

Terra (Trevor's sister) and her husband Josh, had a healthy baby boy last night. He was 8 lbs 6 oz and 21 inches long. They named him Benjamin Huff. He was born via C-Section, but it sounds like it was the way to go. Both mom and baby are doing well. I just think he is adorable- Terra and Josh you do good work. We are so happy for you!!!!!

So My Child

Today I was taking advantage of some quite play time. However, as most moms with active children can attest, too much silence makes you wonder if everything is OK. After several minutes I went to go check on Davin. Of course the negative in me said "I wonder what he has broke", only to find him in the bathroom with the trash can in hand. I asked him what he was doing, he said "Chores, of course". What? Yes you read right! He was emptying the trash can, picking up toys and singing in the process. At that moment I thought, "He is SO my child". Now if I can get that gum out of his hair that he just put in (while I was blogging), then I might get some real down time today!!!! Here (or hair's) hoping.

Thanks to the Taylor's

I just wanted to thank the Taylors for taking our children and for the yummy dinner yesterday. It makes all the difference in the world to have friends, especially ones that support and care for one another. We are grateful for their continued friendship and example. Everything went well at the hospital yesterday and I should know next week the results of the biopsies. I feel that we have a couple more hurdles, but we should get some supportive answers soon. Also a big thanks to Trevor for taking the day off work to be by my side. Love you!

A Strange Answer To A Prayer

I feel like we have had to make so many big decisions lately, that I almost want to crawl under a rock. But life has a way of forcing us to decide. One decision was about Ryan's treatment. Last week the Md's said we should go right to a new medication for Ryan, but because it is experimental I was concerned. So I have been praying to know what to do. The Md's said that we could try steroids again and see if it has any effect since steroids have a lot less negative side effects than the shots. We were instructed to start the steroids when he had a flare-up and try it for 5 days. We were told that it would work within a day or two. So the next day he started with a flare-up, we started the medication and he seemed to only get worse, not better. At first I was frustrated, however, I soon realised that this was an answer. I know that no one wants their child to get "sicker" with treatment, but in this case, I needed to know for sure. AND I am grateful for the guidance we have been given. Now if I could come up with some winning lottery numbers so I could hire a maid, chef, nanny and personal trainer, then we would be in business! JK.

No More Junk Food

We met with the TRAPS "expert" here in Utah. I was very impressed by him. He is actually colleges with the MD that is the leading TRAPS expert in the world. There where some questions I had that he was going to ask him for us. Apparently there are about 100 cases in the world and most people come to the US for treatment at the NIH. There is also another little girl here who is a year older than Ryan that they have been treating. This gives me hope that he will not be such an experiment. Even though he is the youngest case right now, the shots we might do with him have been studied on kids with Juvenile RA. We are not sure how it will work for TRAPS, but we do know what type of side effects we will be dealing with. The bad news, Dr. Prahalad is moving to Atlanta in January. Yeah, I know, that is all we needed. He said we can come see him there or call him anytime, which is good news. I think once we find out how widespread this is in our family we will have to travel for treatment. Now on to explaining the "NO MORE JUNK" title. I think if I write it then I will be more compelled to follow through. I have decided to give up junk. I am going to stay away from sugar and highly processed foods. I know they cause all kinds of problems and are not helping my situation any. I found out this last week that I have a type of endometrial hyperplasia and they are concerned they didn't get it all with the ablation. So if cancer or abnormal cells come back, they will not know until it is upon me "like wild fire". It is looking like I will probably have another surgery this year, however, I'm not convinced these abnormal cells are not related to the TNF in TRAPS. So, next week I am scheduled for yet another procedure to see if inflammatory cells are in my colon as well. I think in the next couple of weeks I will know more about what I am up against. It still makes it hard to sleep at night, however, my gut tells me this is all related to TRAPS. I am so anxious to get my testing back now. So in the end, I am going to be careful about what I eat. I figure it is a pro-active thing I can do with no negative side effects. So any support I can get would be great! I'm not in the mood for cancer, chemo. or one more medical mystery. I need to sleep peacefully again.

Pre-School Has Started

So Davin started pre-school last week. He loves it! Not only does he get to go with friends but he gets his own backpack and homework. They go 2 days a week for a couple of hours. It has been fun having some one-on-one time with Ryan and know that Davin is well taken care of in the process. Also, Trevor had a business trip to LV. He seemed to have a good time, maybe it was all those restful nights? We are happy to have him home, goodies and all.